Thursday, September 11, 2008

**Possibly the longest journal entry yet...may cause drowsy feelings to overcome you. You were warned** Elijah is doing so well! I get reminded over and over again how much God has intervened in our little guy’s life. Children, who have been through what Elijah has been through, simply don’t do what Elijah is doing. There is no explanation for his progress, other than answered prayers.

Is it making a Difference?Here we are, a little over one-forth of the way through HBOT and Elijah continues to make progress. Is it the HBOT? No one knows at this point. The important thing is that he keeps changing every week. We don’t care who gets the credit as long as he’s making changes.

But, do we think it has made a difference? The short answer is yes. My instincts say that the HBOT is helping. The changes are slow, but they’re there. Basically, we feel like we have the same Elijah, we just have more of him. I don’t know how to describe it, other than his eyes seem brighter, he’s more engaging, and he’s more apt to look at me. Is it a miraculous difference? No, but we’re still early in the process. Elijah has had twelve treatments at this point. What will he be like after twenty, thirty and forty treatments? I hope at some point I’ll be able to say definitively that I’m sure the HBOT has helped. At this point, I can’t say that, but that mommy gut instinct must mean something.

Dr. Nice GuyYesterday we took Elijah to a pediatric rehabilitation medicine doctor (also known as a Physiatrist). This is the doctor who was referred to us from our neurologist, Dr. Gloom. A physiatrist prescribes adaptive equipment for people to help them function within disability. It was a really great appointment and we left it feeling relieved and happy.

For those of you unaware, I like to nickname our doctors. I never write our docs real names in this journal, so I give them nicknames instead. We have our neurologist Dr. Gloom, our pediatrician Dr. Positive, and now we have our physiatrist Dr. Nice Guy. Come to think of it, I’ve never nicknamed our neurosurgeon, plastic surgeon or opthamologist. Maybe they’ll get that honor sometime in the future. :)

Based on his nickname, you’ve probably all derived that we liked the guy. He was, well, a nice guy. J I suppose I was expecting him to have that same sappy, sweet bedside manner as Dr. Gloom (since he was the one who referred us), but that wasn’t the case whatsoever. It seemed to us, that the doctors and nurses we talked to yesterday all acknowledged the amazing progress Elijah has made. They said, without saying so, that they don’t see kids like Elijah. Isn’t that amazing?!

HighlightsWhat were some of the highlights of this doctor visit?

-They checked Elijah’s hips via an x-ray to make sure that the socket is developing correctly, and his hips are fine at this point. Dr. Nice Guy did say that his legs are straighter than they should be because of his developmental delay. In other words, because he isn’t crawling or walking yet, his legs haven’t changed like they typically would have, but he wasn’t concerned about it and it shouldn’t affect Elijah’s functionality. .

-Dr. Nice Guy didn’t think that Elijah needs any adaptive equipment at this point. That’s definitely a good thing. We asked about hand splints and so Dr. Nice Guy gave us a prescription for splints to keep Elijah’s thumbs out. He thought that Elijah might benefit from equipment in the future, but at this point he seemed pleased with how Elijah is using his body. He also used the phrase, “When he’s walking, he may benefit from some foot braces, but not now. It’d only impede his jumping.” Did you catch that? “When...”, not if...

-Dr. Nice Guy’s associate actually asked us if it were possible if Elijah had had “just a stroke” instead of brain injury due to oxygen deprivation. She said, “Stroke you can recover from.” In other words, he’s doing too well for what happened to him. They can’t really explain why he’s doing so well. I couldn’t help but rejoice a little bit. She basically told us that she was impressed with what Elijah can do.

- We mentioned to Dr. Nice Guy that we had heard many kids with brain injury have problems with irritability. He said, “You’re right, I do see a lot of kids with irritability problems” and then proceeded to laugh and smile at a laughing and smiling Elijah. We also mentioned that our new PT (not the one through Early Intervention, but one through a private clinic) told us that Elijah jumps so much because of his tight tone. Dr. Nice Guy looked at me a little crooked and said, “Hmm, I don’t see any CP kids jumping like he does.” Obviously his jumping is a good thing. Elijah certainly has really strong legs and they seemed so pleased that he’s so good at weight bearing.

CPI first heard the term cerebral palsy attributed to Elijah when he was still in the NICU. Dr. Gloom told us that the MRI showed extensive brain damage and that they didn’t know what that meant for his future. One of the things he mentioned was that Elijah might have cerebral palsy. At the time, I was devastated, crushed. I felt like my world was crashing around me. Now, I know CP doesn’t mean much of anything.

I had learned in my on-line support groups that kids typically don’t get a CP diagnosis until they are two. Have we thought that Elijah has CP? Yes, we have, but it’s no longer world crushing to us. In fact, to me, it doesn’t really mean much of anything. The beauty of a CP diagnosis is that we might be able to get more services for Elijah, so in some ways getting a diagnosis is a positive thing.Last month, at Elijah’s one year check-up with Dr. Positive, we asked the doc about CP and when (or if) Elijah would be getting the diagnosis. Dr. Positive, when asked about CP, pointed to the garbage can and said, “CP is that kind of a diagnosis.” In other words, it’s a junk term. Then he went on to say, “I think we’d all agree that he has it.” We basically left his office knowing that if we wanted a diagnosis, we could have one.

Fast forward to yesterday, Dr. Nice Guy asked us if anyone had talked to us about cerebral palsy before. We told him about our discussion with Dr. Positive the month before. Then Dr. Nice Guy explained to us what cerebral palsy is and also mentioned that it’s an umbrella term. He explained that CP is non-progressive, is caused by a change in the brain early in development, and shows itself in abnormality in movement and/or posture.

So, to make a long story even longer, Elijah now has an official CP diagnosis. This diagnosis may come as a surprise to some of you, but don’t let it change how you think or feel about Elijah. It shouldn’t change anything. It’s amazing how calm we are about getting this label attributed to our son. Like I said before, it doesn’t really mean anything. It’s a label. Just as an MRI can’t determine what our son will be like, a CP diagnosis doesn’t really tell us anything other than something happened to his brain early in life. We already knew that. If it helps get him services or helps people understand what happened to our little guy, then by all means, use the label. In some ways, it’s easier to say CP rather than brain injury. People are more comfortable with labels it seems.

Do you guys have Medical Degrees?Through this experience in becoming parents, Andy and I have been to a lot of doctor appointments. At most of these appointments, when we first meet a new doctor, Andy gets asked the question, “What is your background? Do you have a medical degree?” It’s really funny.Sometimes I get the pleasure of being lumped in as well. “Do you two have medical backgrounds?” This has happened at least five times, if not more. I have a smart hubby and more importantly he’s an awesome daddy. :)

Long-windedI know, I know, it’s a long post. I was just so excited about our appointment with Dr. Nice Guy yesterday that I had to post all the details about it. Yes, we got a CP diagnosis yesterday, but it didn’t make us sad. What made us so happy was to see the happiness and amazement in the faces of these people who are some of the smartest people in the field. Prayers, therapy, HBOT, positive thoughts...it’s all working. Of course, we give the glory to God. Without Him, our boy wouldn’t be here. Thanks again for sticking with us on this journey (and for reading Elijah’s mommy’s long-winded updates). We don’t know what we’d do without you all. :)

1 comments:

I just hobbled upon your blog searching for other families with children with CP tonight, and I was amused reading this post. I have also gotten the, "Do you have a medical background" question and feel the same way about the CP label that my 6 month old has recently been given. I'm still struggling in how to blog this new term, as I think others will react to it much different than you or I did, but I'll get there. I haven't gotten any farther than this into your blog, but am looking forward to hearing all the wonderful things God is doing in your son as we await more miracles for our daughter. Her name is Myra. Thank you for sharing your son with me. -Ashley

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About Elijahland

This is a story of overcoming the odds, putting trust in God, and the miracle of prayer. Our son, Elijah, was born in August of 2007. As a result of the oxygen deprivation that occured during his birth he spent his first three (agonizing) weeks in the hospital. When he was seven days old, we were told that Elijah had "severe brain damage" on both sides of his brain. At that moment we entered Elijahland and we've been here ever since. We're learning to live with the diagnoses Elijah has started to accumulate, but mostly we're grateful that God chose us to be his parents. It is truly a privilege to live in Elijahland with our handsome boy. Thanks for visiting.